I was the ballast and the hydration distribution engineer

I graduated from Brandon High School on the afternoon of Sunday, May 26, 1996, at the Jackson Municipal Auditorium. Once we all finished walking across the stage (with the exception of Mark who was on crutches after falling out of a tree while wearing a tutu a few nights before), I turned in my rented cap and gown and took pictures with my friends and family. Then, my fellow graduates and I  boarded charter buses and spent the next 15 hours going all over the metro area in order to prevent us from getting drunk and dying. We had a great time with good food, a band, dancing, and gambling until 7:00 the next morning. (Here’s the point where Mom and Dad should probably stop reading.) Continue reading

They just don’t make ’em like that anymore.

It’s been a year since we lost him, and there’s still an empty place in my heart.

 

I’d just finished a couple chocolate chip cookies and was rolling past the phone on the wall by the kitchen door when it rang. Immediately, I knew there was bad news coming even though nobody had answered yet. Mom hopped up to grab it, and I continued down the hall as if I could run away from whatever it was. “How is he?” and, “What do I need to do?” were the two things I heard Mom say into the phone that let me know my premonition was accurate.

 

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A thief gave me the world

I fought it. The symbol of weakness sat by itself in the guest room where I never went. Whenever I struggled to walk past the door, I purposefully averted my eyes, looking down or away. I did anything I could to avoid dealing with the wheelchair the young guy delivered in October of 2007. It was an ominous sign of my fading independence that I hated both for its invasion of my house and what it stood for.

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The View From Nicky’s Seat

The following is a Facebook post from Nicky Williams Dexter. She shared her daily reality and it gripped me. She and I share the struggles of FSHD yet we have different experiences. I’m reposting this with her permission. If you’d like to contact her, she accepts all friend requests from folks interested in FSHD. I encourage all of you to drop her a line of support on Facebook. Continue reading